Helping Children Cope when a Sibling has Cancer

About 75 children are diagnosed with cancer each year in the Ottawa region. Their journey through treatment is often long and difficult. But it's not just hard on them -- it can be hard on their siblings, too. They can feel afraid, worried or confused about facing a new situation they do not understand.

That was how 7-year-old Shelby Schroeder felt when her younger sister Jenna was diagnosed with cancer at the age of 3.

“All she did is lay on the couch and sleep and watch TV with daddy, “ recalls Shelby. Asked if she was scared for her, Shelby nods her head and adds that she was afraid she would catch cancer as well.

“Shelby, she felt left out and scared,” adds her mother Roni Hull, “and it was hard to describe to her what was happening because her sister was always being hauled off and she was getting sicker and sicker. It was frustrating.”

Hull, who lives near North Bay with her family, was pregnant with her youngest daughter Alyssa when Jenna’s cancer was discovered. She was diagnosed with Wilms tumor, a cancerous tumor of the kidney that can strike children under the age of 5. Jenna lost a kidney and part of her bladder as a result.

“I didn't even understand what was going on, never mind a child right,” adds Hull. “A lot of changes are happening so quickly and they're young, they don't understand.”

That’s where Isabelle Sjoberg comes in. She's an Interlink nurse at the Children’s Hospital of Eastern Ontario, who helps kids with cancer and their families cope with all the questions, beginning with explaining to a child what cancer is.

“I tell the parents to keep it simple, to be honest, and to include the siblings because that's important,” says Sjoberg.

She advises that parents explain the cancer this way: “Cancer is about cells, everything is made of cells in our body and something can happen to one cell and it becomes a cancer cell. We don't know why. Kids’ cancers are different than in adults because in kids we don't know the cause of the cancer. It's not contagious, it's not something that they did or didn't do. It's not because they didn't eat their vegetables or stood in front of the microwave, we don't know why but we have treatment, we're always positive.”

It's not just siblings with questions. Sjoberg goes into the child's classroom, too.

“When I go to the classes, I usually ask the kids "how many of you know someone with cancer and at least half the kids raise their hands,” says Sjoberg.

Jenna’s cancer has now been in remission for two years. And Shelby’s fears have subsided. She knows cancer is not fun.

“You can get super sick from it,” Shelby says as she recalls the long hours in hospital, “and you can die from it I would imagine.”

But she also knows it is not contagious.

Here are some suggestions from the experts at CHEO on helping your child and his/her schoolmates understand cancer:

Siblings and schoolmates may be feeling:

Confusion- not understand what is happening and why. This is very common, especially when the hospitalization is sudden.

Guilt- siblings may have been in an argument with their brother or sister and think that they caused the hospitalization. They may also feel guilty because they are not sick, but their sibling is.

Fear- siblings and friends may fear that they might "catch" what their brother/sister or friend has, especially if they are unsure of the reason for the hospitalization. They may also be afraid their friend may not get well and come home or back to school/hockey team/Beaver troupe.

Anger- siblings may be angry at their brother or sister for getting sick. They may be angry that their parents did not prevent their brother or sister from becoming ill.

Jealousy- siblings can feel jealous of all the attention the patient is receiving. The patient may receive gifts and relatives may travel to visit them. Siblings who do not know what is happening at the hospital often think that their brother or sister is there having nothing but fun.

Rejection- siblings may feel left out. If they are unsure about what is happening at the hospital, they feel that they are not included and not important. The sibling may also worry that the parent cares about the patient more because the parent may need to spend a great deal of time with the patient.

Siblings and friends/schoolmates may express these feelings by:

Changing their eating and sleeping habits

Acting out

Clinging to parents

Becoming withdrawn from family and/or friends

Regressing to habits of an earlier age (such as bed wetting, thumb sucking)

Saying they feel sick

Playing aggressively with toys

Suggestions for Caregivers

Parents and caregivers set an example for their children with their behavior. It creates the tone for sibling interactions and influences sibling relationships. It's important for parents to realize brothers and sisters need as much attention and support as the child with an illness or disability. Sometimes they need extra support.

Children need age-appropriate, accurate information about the needs of their brother, sister or friend, and parents, teachers, and caregivers should be open and honest when providing it. At times, siblings/friends may simply need someone to listen to their frustrations about having someone they care about with an illness or disability. Parents and caregivers can listen and validate these feelings without judging.